I am the first born girl to my father, Church Music Director Hans Jürgen May, who inspired me to this beautiful music. He may not know I remember… but I do. I was a young girl when he left. About 11? Maybe younger. Then I did not see him again until I was 35….Then again years went by….then I saw him in 2015…and then never again. We have had our struggles since he left me as a young girl….
But I love him and I miss him and I remember everything. I remember blueberry picking, I remember the smell of his soap, I remember teachings on the fat white tired bike teaching me how to ride, I remember first day of school and my beloved first red leather Schulranzen (backback). I remember me riding on his back as he pretented to be a horse, I remember being loved by him.
I also remember sneaking out of my mother’s house to walk miles across town to see him…only to be punished and beaten by my mother when I returned home…she found out where I went. I got used to the pain and kept sneaking out….but one day my father stopped coming for me…stopped allowing me to see him. My world changed forever….still I never stopped yearning for him and his love. I prayed everyday he would come for me, he never did. He told me once years later “I stopped coming for you because I thought it would be better for you and stop the struggle.”
No it never did…it left a deep wound…which never healed.
I remember my father playing the organ at church in Germany and the piano at home. To this day, I crave hearing the organs play at the old churches in Europe…and most certainly they will always make me tear up…
Wegener’s Granulomatosis is a multi-system disease, which means many parts of the body may be affected. The nose, throat, lungs and ears usually become swollen and inflamed. The kidneys can be involved, too, while for some people it affects the eyes and skin.
Wegener’s granulomatosis is an uncommon disorder that causes inflammation of your blood vessels, which in turn restricts blood flow to various organs. Most commonly Wegener’s granulomatosis affects your kidneys, lungs and upper respiratory tract. The restricted blood flow to these organs can damage them.
Besides inflamed blood vessels, Wegener’s granulomatosis produces a type of inflammatory tissue known as granuloma, found around the blood vessels. Granulomas can destroy normal tissue. What causes Wegener’s granulomatosis is uncertain. Early diagnosis and treatment of Wegener’s granulomatosis may lead to a full recovery. Without treatment, Wegener’s granulomatosis can be fatal, most commonly from kidney failure. Emma was diagnosed late and her kidneys are affected.
Before reviewing the various symptoms, please remember that not all of them are experienced at once. It may be overtime that you or your loved one will have to experience one or more of the symptoms. Each WG patient is unique and may or may not experience these in the same order. It took a grueling year for my daughter to be diagnosed!! God saved her live, if any more time had gone by before she was diagnosed, she may have died.
Signs and symptoms may develop suddenly or gradually.
Constantly runny nose
Sinus pain and inflammation (sinusitis)
Coughing up blood
Shortness of breath
General ill feeling (malaise)
Joint aches and swelling
Eye redness, burning or pain
Double or decreased vision
Weakness and fatigue, possibly associated with low red blood cell count (anemia)
THANK YOU for your continued support and being here to read my blog.
You can read more about my daughter’s journey HERE
“Choosing what they want to do with their life is like trying to watch a YouTube video. When their halfway through the video, they glance over at the sidebar and see something else recommend which seems more interesting.”
A face that is always on my mind,
A smile I have seen a million times,
Two eyes that would light up the sky at night,
One last battle she could not fight,
The day was long, then night…
I knew that soon she’d be gone,
Soon she would be out of time,
To stay with me, she fought so hard,
A million pieces went my heart,
Now a photo I look at to see her smile, next to the urn,
This I do…. I have no choice,
But great memories I will always keep with me,
My love in her heart for eternity,
I never got to say goodbye,
and not understand why, I can but try…